Monday, October 29

What a weekend!

The highlight of the weekend was Tommy's increased oral eating. Here is what mommy tried with Tommy: chicken with ground barley (almost a poppy seed texture, Gerber food), pumpkin pie with whipping cream (okay this one mommy was eating and just decided to use her fingers in Tommy's mouth which is REALLY successful instead of a spoon with new foods and textures), juices thickened in a nosey cup, tapioca pudding, and the BEST was Sunday spaghetti dinner made with ground turkey in the sauce..... yep, he ate it, fork smashed but still the larger spaghetti noodle textures and ground turkey was larger bits for him. He loved it and was reaching for the bowl. I cannot believe how quickly this is increasing for him. We meet with a dietician today and am taking his food journal (very proud of Tommy!).
Daddy and mommy took the boys camping this weekend. We enjoyed visiting with Grandma Sue and Papa Bill as well as old friends Brent and Lisa. Here is a picture of our Halloween outfits. Of course the twins are the cutest chicks and mommy/daddy are chicken farmers!

Tuesday, October 23

Victory from the NG tube

We saw our favorite pediatrician today to give us the Aokay on using the Gtube. After his approval we celebrated by letting Tommy take his NG tube out for the last time! Daddy was working late so it was just mommy and the kids enjoying a hesitant Tommy removing that nasty nose hose.

Liam, Hannah and Tommy are excited!
Tommy wasn't sure he should pull it with so many people watching. He thought about it for a split second, then quickly started pulling it out....


Friday, October 19

Catching up

These past two days at home have been SO much easier than other post surgery at "home days". Perhaps it is because the surgery itself was one of the more minor ones, perhaps because Daddy and Mommy are becoming more confident in their parenting of Tommy's special health care needs, perhaps because Tommy is becoming more able to vocalize his needs -- he is amazing.

Here are some pictures to enjoy only because I downloaded my camera from the past week. Whew, that felt great to do. You other moms know exactly how it feels to have those great pictures trapped on your digital camera. Too busy with kiddos to take the time to download but it's always nagging in the back of your head.... wish I could post some pics.

We picked LOTS of apples a few days before Tommy's surgery. Tommy wasn't so sure about putting that apple in his mouth.... Liam showed him how it's done.

The mother of invention --- Grandma Sue! Mommy wanted some leggings made for post Gtube surgery. This would make Tommy's tummy more comfy without a waistband to worry about. Look at these colorful leggins from Grandma's crafty hands.

Wednesday, October 17

Where is Tommy?

He is home!Today we were discharged from Children's Hospital. Tommy is on pain meds but happy to be home. Our shortest hospital stay yet. And Tommy's quickest recovery, so far. Thanks for all of your prayers!

Tuesday, October 16

Surgery success

Tommy is still trying to wake up from the anesthesia, but we can tell you that he has a Gtube, a hyrnia repair (the surgeon brought cartlidge from his ribs together to close the hyrnia), and what seems to be ear tubes (we don't know for sure though as ENT will be talking to us tomorrow).

Tommy has been trying to wake up for over four hours and just can't shake the anesthesia. Mommy plans to stay with Tommy tonight and rock him. Daddy and Liam will be snugglin' at the Ronald McDonald house. Please keep our family in your prayers.

Our Little Trooper

Our 9am surgery meant we were in the waiting area at 7:45am and Tommy couldn't be fed past 1am last night. He was hungry! But he patiently waited. And waited. At almost 11am the anesthesiologist finally camed to get our Tommy. He is in surgery now for the next two hours. We will update everyone as we know more.

Huge thanks to Grandma Sue for helping mommy move back into the Ronald McDonald House yesterday. The extra hands were much appreciated while mommy packed the twins around. And thank you Grandma Dorothy for staying with mommy and daddy before surgery as these never get any easier. This is Tommy's fourth stay at Children's and his third surgery, it is no easier than any of the others. We are thankful that he is healthy and didn't catch any colds and the surgery could happen as scheduled.

Please keep Tommy in your prayers today and ask that once again God's wonderful grace will see us through. Please pray for a complete recovery from his incisions.

Sunday, October 14

Wonderful day!

Mommy made it to church today, first time in weeks! Daddy was such a sweetie to stay home with two snoozing babies before he left for the Seahawks game. Mommy heard an inspiring sermon and enjoyed a big mocha as a treat.

This past week has been packed with great activities. Monday was playgroup, Wednesday we had another successful feeding therapy appointment and we finished the week with Nate's football game (they finally won one!). Tommy continues to improve in motor skills (rolling all over and supported sitting). We went to an apple orchard and both boys enjoyed holding what mommy/daddy picked. Aunt Debbie's swimming pool was completed on Saturday so Tommy enjoyed watching everyone splash around (too close to surgery tho for mommy to get in with Tommy).

Tommy's surgery is in two days! Tuesday he will be getting the Gtube, hyrnia repair and placement of ear tubes. Please keep him in your prayers for continued health (no sniffles or coughs) and a complete recovery. We will keep everyone posted thru this website.

Mommy has the van packed with all of Tommy's favorite foods, blankies and toys. This will be a much more comfy hospital stay (if that is possible).

Sunday, October 7

Buddy Walk - Team Tommy's Tigers

The Buddy Walk was yesterday and boy did Tommy have fun! In fact it took mommy four times to try to put him to bed last night which is very unusual for Tommy. He kept looking around the nursery as is to wonder where his audience was.

The walk was beautiful! Much of it was along a treelined creek.

We were joined on the walk by Grandparents Bill and Sue, Aunt Tami and cousin Andrew, Ann Marie, Alyssa and of course our family... Daddy, Mommy, Hannah, Nate, Tommy and Liam. We met new friends and got to visit with old friends. And did we mention our friend Mighty Max finished the entire walk!

We would love to say thank you to the Reid Family and Hughes Family for generous donatations (mommy thinks Tommy's Tigers totalled almost $1,200 in donations). Thanks to DsO Whatcom County for continuing another year of such a wonderful event! We are looking forward to next year.

Friday, October 5

Frequently asked question....

Since it is “31 for 21” month amongst the blogging world that parents kids with Down Syndrome. I thought I should post about the most common question that Colin and I are asked, “Did we know Tommy was going to have DS?”.

Let’s start at the beginning as our pregnancy started with a four year conversation. Yes, four years. See, my daughter Hannah is 13 and my son Nathan is 12 and they are from my first marriage. I remarried. My wonderful and patient husband Colin. And I could remember a conversation even when we first dated in 2000, “Do you want to have more kids” he would ask. And I know that question should have a ‘yes/no’ answer. But for us, (or was it me), it was a four year conversation.

Of course you have read the last chapter and know that we decided to add more children to our marriage and were blessed with our twin boys on 12/12/2006. The middle part of our conversation is equally important because those years were in appreciation of our maturity and the possibility for genetic or chromosomal abnormalities. We ended all of those conversations with ‘yes’. Yes, we thought, we could parent a child that wasn’t a typical child. Little did we realize that Tommy would have both a genetic disorder and Down Syndrome. Little did we realize that within days of his birth would we fall in love with him and feel that he is perfect.

So, “Did we know our baby had DS before birth?” yes and no. Although we refused the amniocentisis, there was an ultrasound for the nuchal fold transparency that came back suggesting (that coupled with our advanced ages) we had a 1 out of 2 chance of Tommy having DS.

But the more important question that should be asked is “Have we always wanted him?” absolutely. Always.

Tuesday, October 2

We are in!

In what? We are FINALLY in the blue house, no we didn't move, rather we are finally in the early intervention playgroup. Tommy and mommy went to playgroup yesterday in the blue house (Whatcom Center for Early Learning). And Tommy LOVED it. For the last six months mommy has driven by this house and patiently waited to be 'off the waiting list', she had a hunch Tommy would like it. We met new friends, looked at books (and Tommy loved the books), played with toys, had snack together (green beans and hummus) and yes he ate them with the help of a food grinder and mommy making small carefully placed spoonfuls in his mouth, learned from the speech/feeding therapist and instructional aide. It was wonderful! Tommy is looking forward to next week.

Mommy didn't quite enjoy the 'goal setting' after playgroup. Every few months we set new goals and somehow it is such a stressful event for this mommy. For the past nine months it has been a struggle, at times, to meet Tommy's medical needs and keep him alive. His life has been so fragile at times. Hirshsprung Disease, colitis, open heart surgery.... it seems that Colin and I often live day to day in hopes that Tommy grows healthier and stronger.

Goals, especially cognitive, seem so far from our concerns right now. So when the team asked what goals we should work for, I almost cried. I couldn't verabilize, until now, we just want Tommy to be healthy. To be a survivor. I tire from thinking about cognitive goals when I'm researching a Gtube, scheduling the next surgery, and trying to negotiate Tommy's RSV shots for this next year.

So during this meeting I put on blinders in my mind to stay focused on his abilities, what he enjoys, what makes him smile and curl his arms to his face in delight. Cognitive goals are set, written, signatures, etc. Mommy set them on a shelf.

We will work instead on laughing and enjoying a baby who's next surgery is October 16th. God's wonderful grace will get us through.

Tommy Adventures